Perceptions Of Family Caregivers Research Articles

Caregiver Perceptions of Their Communication With Rehabilitation Providers Who Treat Persons in Disordered States of Consciousness

<h3>Research Objectives</h3> Describe family caregiver perceptions of their communication with rehabilitation practitioners (RP) when treating persons in disordered consciousness (DOC) after severe brain injury (sBI). <h3>Design</h3> Qualitative, using narrative interviewing and grounded theory methods to understand caregiver perceptions of interactions with RP. Cross-disciplinary rehabilitation team including caregivers, RP and researchers. <h3>Setting</h3> Community. <h3>Participants</h3> Fourteen family caregivers (12 female) of persons in DOC following sBI using snowball sampling. <h3>Interventions</h3> N/A. <h3>Main Outcome Measures</h3> N/A. <h3>Results</h3> Caregivers described exchanges with RPs as supportive and respectful but also challenging. Caregivers valued being given information they could understand such as when a RP said "You know him better than anybody." They also appreciated acknowledgement of their loved one's personhood such as "[Patient] writes his own chapters". But felt that personhood was dismissed by RPs when they heard "I've seen 300 cases like this" and their own observations not valued when hearing "it's just a reflex." In these situations, caregivers perceived RPs to be unsupportive and emotionally "not in tune" with them. Caregivers appreciated the opportunity to share their values and preferences but also experienced RPs as authoritarian, "it's their word or nothing," and inflexible, "they are caught up on stats." In those instances, caregivers perceived they were treated "like I know nothing" and were excluded from decision making saying, "they didn't fill us in." <h3>Conclusions</h3> Being a caregiver for persons in DOC is demanding and initially unfamiliar. In healthcare, communication and information exchange are important dimensions of shared decision making. Understanding caregiver perceptions of what is communicated fosters awareness of how caregivers may interpret RPs actions during their loved one's treatment and recovery. <h3>Author(s) Disclosures</h3> Nothing to disclose.

The Image of Nurses and Midwives in Ghana: Patient and Family Perspectives

This study aims to explore the perceptions of patients and family caregivers on the image of nurses and midwives in Ghana. The study adopted a qualitative exploratory descriptive approach. A total of 25 participants were interviewed during data collection. Content and thematic analysis were applied in the data analysis to develop themes. The findings are captured under two major themes that describe the primary influences on participant images of nurses: Thus, (1) nurses’ and midwives’ attributes with four subthemes; staff appearance, communication strategies and behaviors, work attitudes, and professional competence and (2) patients’ status and subthemes were; uneducated poor and educated rich. We conclude that patients and families in Ghana recognize the professional attributes of the nurse and midwife, which reflect in their personality, grooming, communication, competencies, and attitudes. However, low publicity of the professional roles of nurses and midwives may have negative repercussions for their professional image. A policy to perform a regular public audit on the image of the Nurse/Midwife is important for professional advancement.

Programa Personalizado de Atividades (TAP-BR): proposição de uma versão ambulatorial e avaliação dos seus impactos na demência - Estudo piloto

Abstract Introduction The Tailored Activity Program (TAP-BR) is an occupational therapy intervention program that presents promising results in reducing the behavioral and psychological symptoms of dementia (BPSD). Objectives To propose adaptations to the TAP-BR to create an outpatient care version of this program and assess its impact and applicability. Methods The TAP-BR was adapted for use and application in an outpatient care setting, and the applicability of this version was assessed according to the perception of occupational therapy interns and family caregivers. The Neuropsychiatric Inventory (NPI) and the Depression, Anxiety and Stress Scale (DASS 21) were used as outcome measures to evaluate the impact of the adapted version. Results The following changes in the application process of the TAP-BR were proposed for its outpatient format: adaptation of terms in the Intervention Manual and in the Documentation Folder; adequacy of the environmental assessment to be carried out based on an interview with the caregiver; reduction in session duration from 90 to 60 min. From the point of view of the interns and family caregivers, the program can be easily applied. The outcome measures showed that there was improvement in caregiver distress in relation to the BPSD of the older persons with dementia (Cohen’s d=0.49) and in their emotional state (Cohen’s d=0.59), especially regarding the variable depression (Cohen’s d=0.81). Conclusion: The outpatient version of TAP-BR can be easily applied, has a positive impact on reducing the BPSD in older people, and improves the emotional state of caregivers, with emphasis on the variable depression.

Patient, Family Caregiver, and Provider Perceptions on Self-Assessment Screening for Cognitive Impairment in Primary Care: Findings From a Qualitative Study.

The purpose of this study was to evaluate patient, family, and provider perspectives on routine cognitive screening of older adults in primary care using a novel self-assessment tool for detection of early cognitive impairment (CI). We conducted four virtual focus groups with patients aged 65 and older with no CI (n = 18) and family caregivers of patients with CI (n = 5) and interviews with primary care providers (n = 11). Patient and family caregiver participants felt that early detection of CI was important in primary care and may facilitate planning for the future including finances, living arrangements, and advance care planning. Providers reported that they do not use a standardized tool to routinely screen patients for CI yet endorsed the use of a self-assessment CI screening tool. These results suggest that routine screening of older adults using a brief, self-assessment screening tool for CI in primary care may be acceptable to patients, family caregivers, and providers. The findings from this study will inform the development of a brief self-assessment CI screening tool for use in primary care.

Perceptions of Family Caregivers of People With Dementia Regarding Symptom Management and the COVID-19 Pandemic

Nearly 98% of older adults with Alzheimer’s disease and related dementias (ADRD) experience behavioral and psychological symptoms of dementia (BPSD). Although BPSD are linked to caregiver burden, perceptions of family caregivers on the impact of BPSD and their experiences addressing them in the home are unclear, and little is known about the impact of the pandemic on these experiences. Study aims were to explore: 1) the experiences of family caregivers of community dwelling older adults with ADRD regarding BPSD and how they manage BPSD in the home, and 2) how the pandemic impacted family caregivers’ experiences, BPSD of their relatives, and BPSD management. A qualitative, exploratory approach was used; 21 family caregivers were interviewed virtually. Content analysis and constant comparative methods were used. Ten major themes emerged: 1) Emotional and psychological responses of caregiver, 2) Loss, 3) Anticipation, 4) Reliance, 5) Learning to caregive, 6) Rewarding, 7) Emotional and psychological responses of care recipient 8) Cognition of care recipient, 9) Care strategies, 10) Caregiver perspectives. Caregivers did not use terms “behaviors” or “symptoms”, instead they described their relatives’ and their own experiences interdependently. Caregiving challenges presented before the pandemic (e.g. equivocal effects of medications, increasing care demands), many of which were compounded by the pandemic. Future research should explore the experiences of caregivers from a range of backgrounds. Findings illustrate communication barriers exist between clinicians, community services, people with ADRD and their families which may be addressed through clinician education, family-centered care planning, and policies to expand support service access.

Experienced Family Caregiver Perspectives on Advance Care Planning for African Americans Living With Dementia

Most existing advance care planning (ACP) programs do not meet the needs of lower socioeconomic status (SES) African American (AA) older adults living with dementia. The perspectives of experienced family caregivers are integral to achieving appropriate ACP tailoring. The purpose of this study is to describe experienced family caregiver perceptions about needs and preferences for tailoring ACP for family caregivers of lower SES AA older adults living with dementia. This qualitative, descriptive, cross-sectional study is embedded within a larger community-based participatory study aimed at intervention development. Caregivers are completing up to two interviews. Preliminary data describes themes involving Caregiver Stress and suggestions for Service Improvements addressing grief and loss pre- and post-death. Caregiver findings and other stakeholder data from healthcare providers and community leaders will guide the design of a “new normal” enhanced, preference-consistent ACP intervention to improve end-of-life care during a global pandemic that is amplifying pre-existing healthcare disparities.

Interactions between healthcare personnel and family caregivers of people with dementia from minority ethnic backgrounds in home-based care-An explorative qualitative study.

To explore how healthcare personnel in home-based care perceive interactions with family caregivers of people with dementia from minority ethnic backgrounds. Research shows that the organization of home-based care rarely allows opportunities to provide support to family caregivers in practice. However, how these organizational structures influence the way in which healthcare personnel perceive their interactions with family caregivers of people with dementia from minority ethnic backgrounds remains an unexplored area. An explorative qualitative study inspired by a critical realist approach using Pierre Bourdieu's theoretical concepts of field, habitus and capital. Data were collected through individual semi-structured interviews with six nurses and four auxiliary nurses employed in home-based care in Norway. The data were analysed using a thematic analysis approach. The participants were recruited in September and October 2020. 'Family caregivers perceived as facilitators of or barriers to collaborative care' was identified as an overarching theme, supported by two main themes: 'Preconditions for successful collaboration' and 'Challenges for collaborative relationships'. The findings revealed that the participants mainly focused their attention on the dementia patients from minority ethnic backgrounds, while they felt that the family caregivers influenced the way in which they provided healthcare. The findings demonstrate that timesaving strategies have a major influence on healthcare personnel's perceptions of family caregivers from minority ethnic backgrounds. Attention towards the needs of the family caregivers was often replaced by evaluations of their usefulness in the provision of healthcare to the dementia patients. This study raises concerns about home-based care as a rigid and inflexible system. It therefore provides opportunities to raise questions on status quo, stimulate debate and encourage fresh thinking with regards to the support and inclusion of family caregivers in the home-based care system for people with dementia from minority ethnic backgrounds.

Experiences of Family Caregivers of People with Dementia during the COVID-19 Pandemic.

Although behavioral and psychological symptoms are burdensome for people with dementia and their caregivers, perceptions of family caregivers regarding management of these symptoms are unclear. This study explored the experiences of family caregivers regarding behavioral and psychological symptoms experienced by relatives with dementia, management of these symptoms, and changes in their experiences during the COVID-19 pandemic. A qualitative, exploratory approach using constant comparative methods was used; 21 family caregivers were interviewed virtually. The following 10 major themes emerged: (1) Emotional and psychological experiences of caregiver, (2) emotional, psychological, and behavioral responses of person with dementia, (3) cognition of person with dementia, (4) loss, (5) concerns for the future, (6) reliance, (7) learning to caregive, (8) rewarding aspects of caregiving, (9) caregiver perspectives, and (10) care strategies. Caregivers described many challenges to care before and during the pandemic. Acceptable and effective care strategies are needed to promote the well-being of families living with dementia.

Perceptions of Facility Workers and Family Caregivers toward CCTV in Long-Term Care Facilities

Purpose: The aim of this study was to investigate and compare facility workers’ and family caregivers’ perceptions toward closed-circuit television (CCTV) in long-term care facilities.Methods: The participants included 70 family caregivers and 66 facility workers in nine long-term care facilities. A structured questionnaire gathered participants’ perceptions of CCTV in long-term care facilities. Data were analyzed using descriptive statistics, t-test, chi-squared test, and Fisher’s exact test with SPSS 26.0.Results: Family caregivers positively perceived both the function (p&lt;.001) and compulsory installation (p&lt;.001) of CCTV in long-term care facilities compared to facility workers. Also, family caregivers highly perceived the necessity of two improvement plans for CCTV application: “the agreement on a video-data-application plan” (p=.032), and “the necessity of a video-analytics expert” (p=.001) compared to facility workers.Conclusion: Family caregivers were more likely to recognize the importance of CCTV in long-term care facilities than facility workers. Further education on the necessity of CCTV, its positive functions, and various usage methods is required considering that the discussion on CCTV installation in long-term care facilities will become more prevalent. In addition, the legal regulations related to CCTV installation should be prepared in detail. Furthermore, it is necessary to understand that CCTV is not a solution to elder abuse, and long-term care facilities should consider future uses of AI-CCTV.

Tough transitions: Family caregiver experiences with a pediatric long-term ventilation discharge pathway.

Discharging a child home on long-term ventilation (LTV) via tracheostomy is complex and involves multiple healthcare providers across healthcare sectors. To date, there has been a paucity of data with respect to the experiences of families transitioning a child home on LTV. Our objective was to explore the perceptions of family caregivers (FCs) who have completed a newly developed LTV discharge pathway as they transitioned home. We conducted 11 semi-structured interviews with FCs. Interviews focused on FC's experience with the training process, perception of competency from a knowledge and skill perspective, and opportunities for improvement. Interviews were audiotaped, transcribed verbatim, coded, and analyzed using an inductive thematic analysis approach. Eight mothers and three fathers of ten children participated. Six primary themes were identified:(1) making an informed decision, (2) transitioning to rehabilitation, (3) building capacity for self-care, (4) coordinating case management, (5) readying for discharge home, and(6) experiencing home care. Overall, FCs felt that the preparation and transition support obtained through the application of a standardized LTV discharge pathway allowed successful attainment of new knowledge and skills necessary to care for their child with LTV at home.

Barriers to Cooperation With Family Members in Psychiatric Care in Turkey: Perspectives of Health Professionals and Family Caregivers.

Cooperation between families of individuals with mental illnesses and mental health professionals is very important for the quality of mental health care, and there are many barriers to the establishment of cooperation between mental health professionals and families. It is highly important to identify/define barriers to cooperation between families and health professionals from a cultural perspective. The present study was aimed at identifying barriers to cooperation between mental health professionals and families from the perspectives of mental health professionals and family caregivers in Turkey. In the sample of this descriptive qualitative study, 12 family caregivers and 11 health professionals were included. The results of the study indicated seven themes regarding the perceptions of family caregivers and mental health professionals. The themes related to perceptions of family caregivers about barriers are as follows: "learning the process by living," the perception of "my patient comes first," and the perception of "being neglected." The themes related to perceptions of mental health professionals about barriers are as follows: "lack of collaboration within the team," "family itself as a barrier," and "lack of education about working with families." The common theme mentioned by both groups included the "patient-oriented service understanding." The results obtained from this study are believed to be a guide for planning and implementing interventions to eliminate the barriers defined from the perspectives of both mental health professionals and family caregivers. Both mental health professionals and family caregivers need psychosocial interventions for strengthening "family cooperation."

A Qualitative Study of Family Caregiver Perceptions of High-Quality Care at a Pediatric Complex Care Center

ObjectivePediatric complex care centers are an increasingly common approach to address the needs of children with medical complexity (CMC). We sought to better understand CMC caregivers’ perceptions of what constitutes high-quality care at a complex care center. MethodsWe conducted a cross-sectional qualitative study of family caregivers of CMC receiving care at a pediatric complex care center situated within a tertiary-care children's hospital. In-depth, semistructured interviews focused on caregivers’ general experiences at the clinic, positive and negative experiences related to core components of the pediatric medical home, and recommendations for improvements. We thematically analyzed transcripts through a mixed inductive and deductive approach, using constant comparative methodology, with the pediatric medical home model as an organizing framework. ResultsWe conducted interviews with 20 participants (18 [90%] biological parents; 19 [95%] female; mean age 39 years) in outpatient settings. Caregivers described 2 major themes: 1) the value of having a clinician “quarterback” who is in-charge of their child's care and caregivers’ go-to for questions and concerns, and 2) wanting clinicians who are personally invested in and willing to “go above and beyond” for their child. Participants discussed how and which components of the medical home model enable CMC clinicians to meet these needs. ConclusionsFamily caregivers of CMC want clinicians who take responsibility for managing their child's overall care and demonstrate personal commitment to ensuring their child's well-being. Multiple aspects of the medical home framework, rather than care coordination alone, help meet caregivers’ perceptions of high-quality complex care.

Family experiences of caregiving to patients with Alzheimer

PurposeThis paper aims to describe and understand the family experience of caregiving to their Alzheimer patients and to explore the impact of caregiving on the family’s caregiver well-being.Design/methodology/approachThe study involved eight family caregivers from the outpatient department, specifically from the neurology-medical clinic. A descriptive phenomenological approach was used for data collection through in-depth semi-structured interviews.FindingsFour themes emerged: caregiver perception, tension, the sense of duty and commitment and altruism and sacrifice. The experience of family caregivers was different from their experiences with other chronic illnesses.Originality/valueThe family caregivers experience new life when providing care to their patients with Alzheimer's. The impact of the process of caregiving on whole life appeared in both positive and negative aspects. The perception and awareness of family caregivers toward Alzheimer’s disease were poor.

Cross-Cultural Adaptation of the Tailored Activity Program for Brazilian Portuguese

Brazil lacks an Occupational Therapy methodology of action, justifying the cross-cultural adaptation of TAP. Objectives were to adapt TAP reference materials to the Brazilian culture and evaluation of the applicability of the Portuguese version by perceptions of Occupational Therapists (OT) and family caregivers. The methodology used translation, back translation, evaluation of semantic, idiomatic, conceptual and cultural equivalences and pre-test of materials for production in Portuguese. The OT applied the translated version and evaluated its applicability. Caregivers evaluated the social impact of the adapted program. The cross-cultural adaptation process adapted the entire materials program to Portuguese culture. The OT perception is a need to include one session to guide caregivers and to modify the cognitive assessment used. The caregivers pointed out that TAP helps them in understanding and caring for the elderly with dementia. The TAP-BR has been adapted to the Brazilian culture. Part of a symposium sponsored by the Behavioral Interventions for Older Adults Interest Group.

Primary caregivers experience of anti-psychotic medication: A qualitative study

BackgroundManagement of schizophrenia is now shifted to the community setting and family caregivers are the primary caregivers. Managing medications is a complex responsibility of family caregivers caring for patients with mental illness. Medication compliance contributes to improve health outcomes and reduced hospitalization for the care service users; however, little is known about attitudes and perception of family caregivers. Aims and objectivesTo explore family caregivers experience towards antipsychotic medications. MethodsA purposeful sampling of 21 family caregivers was included in the study. Semi-structured interview was employed to collect data from the participants between May and October 2015. Thematic analysis approach was used to identify the common pattern in the data. ResultsFour main themes emerged from the study: insight into illness (poor understanding of illness), treatment factor (thinking about medication, poor guidance for medication compliance), resources and support (availability of medication and cost of medication), health care provider factors (communication gap and poor assessment with follow-up, social dysfunction (social isolation, disruption in life routine) of the primary caregivers. ConclusionsResponsibility for providing care for patients with mental illness are taken place in the community setting and cared by family caregivers. More information resources are required for this role, which requires specific medication management skills and knowledge.

Family caregiver perceptions of end of life in persons with and without dementia

BackgroundWe compare the End of Life [EoL] period, the period of decline to death, for persons with dementia [PwD] to those without dementia, examining the duration and number of stages, and their precipitating events. MethodsIn this cross-sectional study, 70 primary caregivers of decedents were interviewed. Frequencies were compared using the McNemar statistical test. ResultsPwD were more likely to be female and older, compared to those without dementia. For PwD, the reported duration of the EoL period was significantly longer, involved more stages, and included a longer first stage. Precipitating events for EoL were more likely to include cognitive decline for PwD, but for those without, more likely to involve a new medical diagnosis or decline in health status. DiscussionEnd of Life as the final stage of development differs significantly between the two populations in length and other parameters. This has considerable implications for the experiences of PwD.

US data on children and youth caregivers in amyotrophic lateral sclerosis.

An estimated 1.4 million young caregivers (<19 years of age) in the United States provide care to ill family members yet remain hidden from state and national caregiving programs and services, including amyotrophic lateral sclerosis (ALS) caregiving services. Given the intensive care needs and acuity of ALS, appreciation of the young caregiver experience within the family context may have a significant impact on patient and family quality of life. This article seeks to identify family and youth caregiver characteristics and perceptions of care through interviews with 38 youth caregivers and their families with ALS. Online adult surveys and follow-up youth interviews were conducted with families with ALS across the United States in this cross-sectional study. Participants were accessed through chapters of the ALS Association. Both thematic content analysis and descriptive statistics were used. Youth caregivers (n = 38) ranged in age from 8 to 18 years and spent an average of 5 h/d providing care for an average of 12 tasks. Persons with ALS relied on youth primarily due to cost and identified complex feelings about relying on youth caregivers, including feeling like a failure, guilty, but proud. Youth are intricately involved in all areas of caregiving in ALS. They are isolated and have little training or guidance in care, yet they are able to identify ways to manage their care burden. Results provide clear implications for health care professionals in designing best care and support practices for persons with ALS and their young caregivers.

Perceptions of Stress: Patient and Caregiver Experiences With Stressors During Hospitalization.

Hospitalization for a cancer diagnosis and treatment may trigger stressful experiences for patients and family caregivers. The purpose of this study was to identify patients' and caregivers' perceptions of stressors during hospitalization and evaluate their education needs. A descriptive correlational research design was used to determine whether there is any correlation between the stress perceptions of patients and family caregivers and their need for additional education on health-related issues. Patients reported experiencing mild to extreme stress for sleep deprivation, pain, tube and line restrictions, and financial issues. In addition to these stressors, family caregivers also perceived that waiting for test results was a main reason for stress in patients. A positive significant correlation was found between the total sample mean stress scores of patients and their need for additional education on health-related issues.

Perceptions of Family Caregivers of Home-Dwelling Persons with Dementia regarding Access to Information and Involvement in Decisions

ABSTRACTThis cross-sectional study explored factors affecting information about available health services, content of services provided, and involvement in decisions regarding services as perceived by the family caregivers of home-dwelling persons with dementia in Northern Norway. Altogether, 788 family caregivers were invited to participate in a survey, with a response rate of 54.6% (n = 430). The respondents reported modest levels of perceived information and involvement. Few of the expected predictors were associated with the outcomes. Ordinal logistic regression analyses revealed that primary school as the highest level of education and perception of caregiving as moderately or very demanding predicted lower scores on family caregivers’ perceived level of information about available services, information on service content, and involvement in decisions. In addition, medium household income predicted lower scores on information about service content. The results may point to mechanisms that create inequalities in the processing of information and involvement in care decisions regarding care arrangements among different caregiver groups. Health authorities should investigate potential social inequalities in complementary health care for home-dwelling persons with dementia.

A Mobile Health App (Roadmap 2.0) for Patients Undergoing Hematopoietic Stem Cell Transplant: Qualitative Study on Family Caregivers' Perspectives and Design Considerations.

BackgroundHematopoietic stem cell transplantation (HCT), also referred to as blood and marrow transplantation (BMT), is a high-risk, but potentially curative therapy for a number of cancer and noncancer conditions. BMT Roadmap (Roadmap 1.0) is a mobile health app that was developed as a family caregiver–facing tool to provide informational needs about the health status of patients undergoing inpatient HCT.ObjectiveThis study explored the views and perceptions of family caregivers of patients undergoing HCT and their input regarding further technology development and expansion of BMT Roadmap into the outpatient setting (referred to as Roadmap 2.0).MethodsSemistructured qualitative interviews were conducted among 24 family caregivers. Questions were developed from existing literature coupled with prior in-depth observations and interviews in hospital-based settings to explore the study objectives. Participants were recruited during routine outpatient clinic appointments of HCT patients, and all interviews were conducted in the participants’ homes, the setting in which Roadmap 2.0 is intended for use. A thematic analysis was performed using a consistent set of codes derived from our prior research. New emerging codes were also included, and the coding structure was refined with iterative cycles of coding and data collection.ResultsFour major themes emerged through our qualitative analysis: (1) stress related to balancing caregiving duties; (2) learning and adapting to new routines (resilience); (3) balancing one’s own needs with the patient’s needs (insight); and (4) benefits of caregiving. When caregivers were further probed about their views on engagement with positive activity interventions (ie, pleasant activities that promote positive emotions and well-being such as expressing gratitude or engaging in activities that promote positive thoughts, emotions, and behaviors), they preferred a “menu” of positive activities to help support caregiver health and well-being.ConclusionsThis study involved family caregivers as participants in the development of new components for Roadmap 2.0. Our research provided a further understanding of the many priorities that hematopoietic stem cell transplant family caregivers face while maintaining balance in their lives. Their schedules can often be unpredictable, even more so once the patient is discharged from the hospital. Our findings suggest that expanding Roadmap 2.0 into the outpatient setting may provide critical caregiver support and that HCT caregivers are interested in and willing to engage in positive activities that may enhance well-being and attenuate the stress associated with caregiving.International Registered Report Identifier (IRRID)RR2-10.2196/resprot.4918